HER2 Support Group Forums - View Single Post - !!! Pertuzumab may be approved by FDA as early as Friday !!!!

Lani · 06-06-2012, 08:15 PM

Sheila,
Am still exhausted from the conference and 7 ADDITIONAL hours of jetlag since the conference (yes, I am the scarlet pimpernel!) but could you have radiation recall dermatitis?

Google it, review your drugs and your radiation field and let me know if am just in some sleep-deprived, jet-lag induced confusion or perhaps barking up the right alley.

I have only read about it, but wouldn't it be nice if it were something other than cancer.

I read a number of scary things about your proposed radiation treatment way back when and tried to post some of it without alarming you prior to your decision on your brachial plexus treatment...some of these side effects happen late and some may perhaps be amenable to trreatment eg perhaps trental for postradiation fibrosis.

Since you are now in the realm of rare problems, perhaps it would be wise to review some of the literature. I doubt many individual oncologists or radiation oncologists even in cancer centers have a lot of experience with those with brachial plexus involvement so it might be wise to compile all of it and look for trends. You should not have trouble with the terminology I suspect as I recall you were trained as a nurse and researched and spoke up admirably about the price of herceptin.

Try to separate yourself from what you are reading in the literature-- my usual suggestion is to substitute the words chcocolate, marshmallows and whipped cream for words you don't like to read such as metastasis, overall survival, progression free survival and try to slog through the literature.

Unfortunately,they still don't really know for sure HOW radiation works against breast cancer and what makes different people react differently to radiation therapy (no doubt it is largely genetic).

If I am not just stuporous and imagining things and it might be radiation recall dermatitis, at least the problem would not be the cancer itself. Even if I am totally whacked out and delusional it couldn't hurt to review the literature on radiation to this area and the reaction to it, results from it to try to understand what might be going on.

Best of luck!

06-06-2012, 08:15 PM	#22
Lani Senior Member Join Date: Mar 2006 Posts: 4,778	Re: !!! Pertuzumab may be approved by FDA as early as Friday !!!! Sheila, Am still exhausted from the conference and 7 ADDITIONAL hours of jetlag since the conference (yes, I am the scarlet pimpernel!) but could you have radiation recall dermatitis? Google it, review your drugs and your radiation field and let me know if am just in some sleep-deprived, jet-lag induced confusion or perhaps barking up the right alley. I have only read about it, but wouldn't it be nice if it were something other than cancer. I read a number of scary things about your proposed radiation treatment way back when and tried to post some of it without alarming you prior to your decision on your brachial plexus treatment...some of these side effects happen late and some may perhaps be amenable to trreatment eg perhaps trental for postradiation fibrosis. Since you are now in the realm of rare problems, perhaps it would be wise to review some of the literature. I doubt many individual oncologists or radiation oncologists even in cancer centers have a lot of experience with those with brachial plexus involvement so it might be wise to compile all of it and look for trends. You should not have trouble with the terminology I suspect as I recall you were trained as a nurse and researched and spoke up admirably about the price of herceptin. Try to separate yourself from what you are reading in the literature-- my usual suggestion is to substitute the words chcocolate, marshmallows and whipped cream for words you don't like to read such as metastasis, overall survival, progression free survival and try to slog through the literature. Unfortunately,they still don't really know for sure HOW radiation works against breast cancer and what makes different people react differently to radiation therapy (no doubt it is largely genetic). If I am not just stuporous and imagining things and it might be radiation recall dermatitis, at least the problem would not be the cancer itself. Even if I am totally whacked out and delusional it couldn't hurt to review the literature on radiation to this area and the reaction to it, results from it to try to understand what might be going on. Best of luck!